Tuesday, 30 November 2010

This afternoon, a porter arrived to take me down to the endoscopy suite. They were going to insert a nasal-jejunum tube to make the MRI easier. The tube by-passes the stomach and feeds straight into the small bowel. It would mean I wouldn't have to drink litres of horrible contrast tomorrow and they would get a better image.

Today, I am weary, and I feel unwell. I shuffled down for my last cigarette, but the unremitting nausea that I've had all day mocked me by finally turning to vomit just inside the door to the secret garden. As I started to gag, the NJ tube started to shift - something I've never had happen before).

Suddenly, the tube is looped back in my mouth, the new kink pressing against the back of my throat. I can't breath. Shiny brown-red clots are streaming from my mouth, and all I can do is catch them. I look around wildly for an emergency cord. I am kneeling on the cool ceramic floor and slip on the clots as I realise there is no cord.

I am dying. This is it, I am going to die. After all I've survived, the workaday end would be a toilet floor of a hospital, all alone. I am choking, I can't draw a breath. The choking shuts down all my other strength, it is all there is. I must have started to crawl towards the door, but the toilet is at the end of a corridor to nowhere and I am going to die before anyone sees me.

I shout a gurgling, deep cry for help. The word contains my very last hope.

A sister is by me. She is taking my wrist and her other arm is round my waist. I manage to rake a long gravelly breath into my lungs but then choke again. She is telling me to breath and walking me down the corridor. I look at her and open my mouth to show her where the loop of tube was blocking my windpipe, but she marches me on. I try to beg her with my eyes not to move me, I need her to grab the loop and pull it clear of my windpipe, but relentlessly, she marches me on.

I manage to beg her to stop, but she keeps repeating "Keep, walking. Keep walking."

We speed down the ward, clotted brown jelly leaving a trail behind us and falling through my fingers. I drag another laboured breath in and suddenly I am gone.

I watch myself, with cool detachment rush along the hall. I stop gagging, I stop choking. I feel calm and just march. The lift is not there and I see her push the button to summon it down. I am dying and she is making we wait for a lift. Somewhere deep, deep inside me, I think I even find that funny.

We are back on my ward, and Alison, heroine of Friday night, takes one look at me and pulls the tube straight out. She supports me back to my bed and puts an arm around me.

I don't cry, but my head plonks on her shoulder and we sit on my bed and stare for a while, her arm tight around me. Each of us is thinking

"Shit, that was close".

Post Script, 2.51am

Half an hour or so passed, and the nurse popped back to see how I am. I was shocked, detached and unimaginably tired. She said she thought she ought to get a doctor to give me something "fluffy" (her word) and check me over.

He declined to come.

So, just as I always do, I will get through it myself. Just like I always do, I will "Pull myself together." Just like I always do, I won't make a fuss. Just like I always do, I will lay here awake, my mind replaying horrors until I fall into exhaustion.

On top of all that, something so fundamental has been overlooked, that I can't even tell you about it here. I like tonight's nurses and they've been kind to me. If I told you the final part of my story, they would lose their jobs and the NHS would just lose two good souls.

Monday, 29 November 2010

OK, the title's a complete lie, but it got you to open the link, didn't it?

If you could only achieve my levels of geeky nerd-hood, you would have known much of what the coalition planned to do well before the election. I was under no illusions, I knew VAT would rise, I knew culture and sport would be clobbered, I knew IDS planned to totally reform welfare and I knew that Nick Clegg wanted a deal with Cameron and would have not tolerated one with Labour even if they had won more seats.

I remember the last Conservative government in all it's nasty-party glory. Education neglected, health crippled, culture invisible, crime soaring, society denied, unemployment raging. My only glimmer of hope was the assurance they'd changed. That "Dave" really had dragged them into the 21st Century and that Conservatism was now Compassionate.

Watching the CSR settled that question pretty conclusively. I watched open mouthed as Osborne went further than even I ever imagined he might. Often, the policies he was announcing sounded fairly reasonable, but it seemed no-one had considered the impact of them 2 or 3 years down the line.

There were serious risks attached - not just to one or two policies, but to all of them. I had the impression that Dave had stood at the head of the cabinet table in front of a whiteboard, urging all departments to "Think outside of the box," encouraging policy formation through "Blue Sky Thinking." The PR man could inspire his team to dream, but like most good marketing men, felt little need to concern himself with the finished product. Details were something mere mortals would work out when the time came.

The Immigration Cap might well lead to a skills shortage, the VAT rise would only take money out of the recovering economy, the housing benefit cap could dispossess thousands of families. Scrapping cancer guarantees and NHS targets would cost lives, whilst cutting local authority budgets would squeeze schools. Unemployment would rise and therefore the benefit bill would rise with it. Crime would soar, (as it always does when unemployment is high) but the police would be short staffed, and unable to react. Even if they did catch the criminals, courts would have closed and prison places would have been cut. Reducing care budgets would only put extra pressure on the NHS, as elderly patients block more beds with nowhere to go home to.

My biggest fear was that by the time people fully realised the impact of so many jumbled policies, so much damage would have been done, it would be hard to ever reverse. I had faced such a wall of apathy during the election, I feared no-one would ever care about anything again. I remembered all to well how much we had put up with under the last Conservative government before we finally put our foot down over the Poll Tax. We would have to pass the compulsory three years tutting, then a year or so tutting and shrugging before we moved on to a good few years of writing very stern letters to the Times. Only when every very British form of protest had been exhausted would we take to the streets a la France - us Brits seem to find resistance uncouth.

But hang on, what's this? A sea of beanie hats, dreads and pink hair has risen up! (A little after midday, but better late than never.) There are tens of thousands and more join every day. They tweet and they digg and they poke and they meme. Against all the odds, they are achieving formidable!! Their flower-power parents couldn't be more surprised to find their grunting hulks of lethargy painting banners and planning marches.

Students have declared the rise in tuition fees unacceptable and they have done it just 6 months into the coalition. They have blazed the trail. Nurses and doctors and teachers and the disabled have watched the footage of rallies and demonstrations and realised that they can say no too.

I'm firmly convinced that we ain't seen nothing yet. In two or three years, I fear that we, the people, will need to remove our support for the coalition. I couldn't be more delighted that it is young people that are showing us the way. By not waiting until it was too late, they've shown the rest of us that we don't have to either.

What joy, to see the boy's delighted faces when they first saw me, to cuddle their little bodies and breathe in their baby smell.

Saturday evening, we went for dinner together. We found a cosy, dimly lit pub with a nook lined with sofas. Christmas trees were shining silver, gold and red and fairy lights painted rainbows on our skin.

We ate together and it felt like home. I savoured a glass of wine as though It were Cristal and we ordered the boys enormous cookie and ice cream desserts, gooey with cream and sprinkled sweeties.

Today, we took them to the cinema and while they watched the screen, I watched their engrossed faces and tried to store away enough of their giggles and kisses to see me through the week ahead.

It never fails to amaze me how wonderful tiny pleasures seem when you've been in hospital for more than a week or two. Colours seem brightly vivid after the drab, institutional wards. Wine tastes of freedom after weeks of denial and shines like gold in the glass. A kiss feels more precious, a laugh more of a privilege and the cinnamon, citrus and pine scent of Christmas chases away the last stench of antiseptic and sickness.

The days I've left hospital have been some of the best of my life. Nothing on earth feels as good as getting the chance to experience and appreciate afresh the simple wonders and comforts and pleasures of your life. They are moments of pure happiness and satisfaction.

Saturday, 27 November 2010

Every small tap or slurp is magnified a thousand times, so I jump out of my skin at nothing and feel like I want to strangle anyone who dares even to breathe in my presence.

It makes my muscles twitch, so that, out of the blue a cup of tea I'm holding might shoot across the room. I don't even carry my baby down the stairs as I'm frightened I'll drop him.

It makes me sweat. I wake up in the night literally drenched, lying in a wet bed that I have to either change or give up on, choosing instead to plod downstairs to the sofa.

It makes me itch. I watch this twitchy, itchy wreck, constantly scratching at herself like an addict and slurring through mangled sentences. I simply stay in my bedroom now, so that I don't have to share that pathetic version of me with those that love me the most. Sometimes it means I spend days on end upstairs vomiting and hiding away.

It keeps me awake, so it's fairly common to see me padding about at 3am. Often I don't actually manage to get to sleep until dawn.

It mashes my brain and makes me forget what I'm writing or whatever I was in the middle of saying. I hate that, it embarrasses me.

I have to take it by injection, giving me sore legs, ugly bruises and the constant risk of abscesses.

When I've taken it, an hour or so later I almost always desperately plead at my husband "What about this did I think was better than being in pain?"

But tomorrow or the next day, the pain will rage and all over again it will seem inconceivable that I just tolerate it. It is not a tolerable pain.

The team here have been at the very forefront of global genetic research into inflammatory bowel disease. They are looking at medicine in an entirely new way and were one of the first teams to foresee how vital genetic medicine would become.

Tonight, if you will, raise a glass to Miles Parkes, Stephen Middleton, John Hunter, Francesca Bredin and Alison Nightingale. (Yes, really and no, her name isn't Florence)

You've probably all seen the Guardian CiF article by now, but in case some of you missed the brouhaha (how good is that word? Possibly my favourite.) it's quite a good story.

A few days ago, I logged onto Twitter to find a page full of tweets and retweets from Comment is Free - they had posted the link to my blog with the tantalising question "Does anyone know this blogger? Do you have contact details?" I replied that it was me and they asked me to write a piece on pain management in long term illness.

Of all the subjects they could have picked, this is the one closest to my heart.

[Slow motion, pushing through treacle-thick confusion, but the voice is still too far away]

"Susan"

"AGGGHHHHHHHHHHHH"

A cold hand takes mine and the last wisps of that other place shoot suddenly away. I find the scream is coming from me.

"Susan, Can you score your pain out of 10?"

ELEVEN!

Involuntarily, my mouth forms a new scream, but it chokes off in my throat. There is a burning, searing, terrible, pain ripping through me. I realise that every act of wakefulness sends a wave of white-hot agony in sickening spasms through my body. I try not to even blink.

Dave is here now, and I drag my eyes to meet his, hoping that the look alone could speak for me. What had happened? Why does it hurt? Where am I? Please, please, please make it stop.

We are rushing through corridors, every rattle and knock of the bed bringing fresh horror, Dave grasping my hand and almost running alongside to keep up.

The bed stops and a nurse is there. She's holding an ice cube and whips my covers back quickly. She presses it to my stomach and the severed nerves shoot and shock in protest. "Tell me when you can feel the ice cube Susan."
Quietly, I hear myself gulp "Now." She presses the other side "Now" and each thigh, "Now. Now." and on down my legs to my feet.

She looks at me strangely. "Try to calm down now Susan, getting yourself worked up won't help."

I stare back at her in wonder, not quite sure what she's meant.

My Mum is there now, too. She looks shocked and terrified, tears brimming in her eyes. Dave is grey and shaking.

The nurse has gone and I force myself to think through the nightmare.

I've had surgery. They'd taken me down some time after 2pm and it was 9ish now. I've had surgery before and it didn't feel like this. I'd been given morphine for my first op, but it hadn't agreed with me - causing me to lose consciousness. What's more, it hadn't even worked for the pain. This time, they'd persuaded me to have a fentanyl epidural, assuring me that it wouldn't have the same effect. I should be numb from the waist down, but clearly that wasn't the case.

Cautiously I try to lift my hand to see if anything is numb at all. Tensing the muscles in my arm tenses the muscles in my abdomen and I convulse, gagging against the pain and sending all the other nerves into a symphony of protest. I take a deep breath and force myself to feel my abdomen, down, to my legs as far as I can reach.

Nothing.

I manage to whisper to Dave that it isn't working and he run's back to find the nurse.

He's back, apoplectic with helpless rage.

"She won't come!!" She says you need to calm down, that you're giving yourself more pain because you keep shouting and gagging."

We are dumbstruck. No-one says anything for a moment. My Mum is crying, Dave seems unsure whether to stay with me or run back to the nurse. My head starts to hurt and I start shivering, every shiver rippling my muscles and giving me fresh convulsions of pain.

For the next hour or two, we exist. A bizarre routine of telling the nurse I am in pain every time she comes to take my 15 minute obs and her replying that I just need to calm down. She says she's called a doctor, but he could take hours to come and I ought to try to get some rest if I wanted to get better.

At about 11pm, she comes into my curtained cubicle and tells my Mum and my Dave that they have to leave. They are disturbing the other patients. In chorus, they both answer in furious whispers that there is no way in the world they are leaving until I'd seen a doctor and my pain had been treated.

To our astonishment she threatens to call security and in the end they have no choice but to go.

Now I'm on my own. It's dark and I'm frightened. The only sounds are the beep-beep-beep of machines and my intermittent screams.

I press my call buzzer but nobody comes. When I can spare any energy to notice, I realise my head is now splitting and I remember where I've had this kind of feeling before. I'd got a headache like this the last time I had morphine, and when it had reached the level of unbearable, I'd lost consciousness.

Finally the nurse appears to do my obs, which must have changed to hourly. I dredge up every last drop of courage and control and speak to her, quietly but urgently.

I tell her that morphine doesn't help with pain for me. I tell her that the epidural isn't working anyway for some reason, but that if she didn't get a doctor very soon, I was going to lose consciousness and need a crash trolley. I beg her to take me seriously, but she doesn't even answer and walks away.

Silently, I sit alone, crying, but so terrible is the pain that I don't even sob. Tears just brim and then fall down my cheeks, slowly dripping onto the sheet. I try to stay perfectly still. I wonder if I will die, here, tonight, alone and in agony. My buzzer is lit, but the nurse never comes.

It's 1am. I've been living hell for 4 hours and I can feel I am drifting away. My eyes keep falling shut until I find myself starting awake, waves of searing, burning pain resenting the jolt.

At some point I realise the nurse is back, but she seems a long, long way away. I know I should beg her again, try to make her understand, but I can't remember why it was so important. Suddenly she yanks my head up off the pillow and seems to be tying something round my head. This unexpected twist is enough to stir me a little and I realise she is blindfolding me with an ordinary, winter scarf.

"I'm going to try the ice-cube again Susan, tell me when you can feel it." She plays a morse code of No. No. Yes. Yes. Yes. No. On my skin. Sometimes I feel it, sometimes I don't. Perhaps she is playing tricks with me - a kind of blind-man's-buff for power freaks.

She's taking off the improvised blindfold and as I blink to clear my eyes, I see her face has changed. She looks pale and panicky. She asks me to score my pain out of 10 and somehow, through numb, cracked lips, I manage to whisper "11".

*******************************************

"["Susan! Susan! Wake up, it's all over."

[So tired. Not yet]

"Susan!, Susan!

[Who is that?]

"Susan"

[Slow motion, pushing through treacle-thick confusion, but the voice is still too far away]

"Susan"

I try to see where the voice is coming from and carefully moving my head to the right, my eyes focus on a friendly house-officer I'd bonded with previously over a shared love of travel. I was so grateful to see a friendly face, I sobbed and smiled all at once.

"You gave us quite a fright there Susan, what happened?

I haven't got a clue what happened and I'm not sure why I'm waking up again. I tell him about the morphine and the epidural and the blindfold and the knowledge I was going to lose consciousness but not being able to convince the nurse. He doesn't know what to say.

In the end he composes his face and settles for a cheery:

"You popped off for a bit there Sue, glad to see you back."

I supposed that I would be glad in the long run, but given the pain, at that particular moment I'd have preferred to stay wherever it was I'd "popped off" to. I tell him the fentanyl in the epidural is not only not giving me any relief from the pain, but that it is what caused me to crash. I tell him he needs to stop it from steadily dripping into my system and find me a pethidine pump in stead.

Stepping back for a moment into the horror film farce, he tells me that only a consultant can authorise the change and I will have to wait until morning.

I Grab his arm and make him look me in the eyes.

"Listen, either you pull this fentanyl drip out of my back or I will.

If we don't, I will die.

If you leave me in this kind of pain, I may die anyway."

He looks unsure, then strides away - long determined steps thudding reassuringly down the ward. I say a prayer that he will save me.

In moments he is back. He has a syringe in a little cardboard tray. Alongside, there is another syringe - the biggest I have ever seen. A nurse follows him. (though not Bitch Blindfold this time.) She is dragging a pump attached to a drip stand.

Doc-Buddy unscrews the little cap on my venflon and pushes the liquid in the first, smaller syringe slowly into my vein. Immediately, I feel a warmth and a comfort and a ray of hope, spreading through my blood, easing and soothing like magic.

He takes the enormous syringe and installs it in the pump. In a series of beeps it starts to whirr and he gently closes my fingers over a remote control with a glowing orange button.

"Press it when it hurts - you can't have too much, it's timed out to 5 minutes. Try to build it up for an hour or so, but I've given you a massive bolus, so you should feel better soon."

Thursday, 25 November 2010

I told you about nurse nasty the other night. She of "'Ave you got a problem??"
You might remember that the first thing my brain asked as it dragged itself back to consciousness was "Am I imagining this? Is she really picking a fight with me or is it just me?"

I've made a little friend - let's call her Diabetic Daisy. We're both young, both fed up, both relatively mobile and two days ago, a bed became free in her bay. We asked our respective nurses if I could move into it, so that we could be together, but they said no. They explained that another patient was coming in and they needed it for her as she was "really poorly. Hmmm, so poorly, apparently, that she's already gone home, while Diabetic Daisy has been here for a week and I've been here for 2 weeks.

Still, no harm, the bed is free now, so we asked again. We thought it through this time. We didn't ask the day shift - they seemed stressed - we thought we'd wait til it was nice and quiet and they were at our respective beds doing something anyway.

I asked very pleasantly if I could move, but the nurse shook her head (without looking up from the drug trolley) and started to say how a really poorly patient needed the bed.....

I was disappointed and started to say how nice it is if you can find a friend in hospital, and she started to tell me off! She tutted and said I "had to understand" that a patient needing care is much more important than whether I could be near my friend or not.

Again, as so often before, that burning sense of injustice rose to my mouth and wouldn't let me stay quiet. Quietly, but firmly I told her that being in hospital for a long time is hard and that "hard" isn't just a word. Being in hospital is enormously difficult, utterly lonely, endlessly frightening and boring beyond words - having a friend to say goodnight to or someone to talk to when you wake up at 3am frightened and alone is surely worth quite a lot too?

She was sucking her teeth by now, her face set to total disdain and still not looking at me.

I left it for a minute as she counted out my night time drugs and my frustration eased a little. She still looked cross and I tried again, quietly, with as much conciliation in my voice as I could manage. I suggested they might at least consider moving diabetic Daisy into my bay, if the other was needed for really sick patients. I asked her not to be cross, I was only asking a reasonable question, not being rude or selfish.

She said if we really wanted to see each other we could go for a walk! Then she told me for the 3rd time that I "had to understand" there were patients much sicker than me who needed the bed. I gave up, told her I understood that part very well, and went back to my book.

I've got two things to say about it. Firstly, I can't tell you how insulting I find it to be told that I'm not really sick, or that other patients are "much sicker than me." Are they? They might be acutely sick, but Crohn's has ravaged my life and I'll still be here next week and the week after, when the serious cases have long gone home to get ready for Christmas. It's also insulting to even imply that I would rather put my selfish requests before acutely ill patients.

Secondly, I can't really say the care has been very impressive. I've told you some of the more juicy moments, and it will soon have a post all of its own, but there's no escaping the fact that every day is a catalogue of cock-ups. They don't get my supplement drinks when I need them, liquid feeds go up late, they forgot my iron transfusion and my new anti-sickness medication, they haven't put my venflon back in and they've sent me for the wrong investigation. My injections are always late or they've run out, patients wait hours for a commode, blah blah blah blah blah until you want to scream and never stop.

If they won't or can't care for me with any efficiency, and we've already talked about an all too frequent lack of compassion, then surely they could at least let me have a friend? Surely any human being could see the value of a friend at a traumatic time?

It's not even the bed I'm cross about, it's being spoken to (again) like a naughty little girl!! So astounding do I find it, that once again, I find myself asking : Is it me? Did I over-react? Am I over-sensitive? A selfish-malingering-attention-seeking-junkie-bitch? I really don't think that I am, but in the end you begin to wonder. They can't all be wrong - can they?

A fellow warrior just told me he'd taken on a battle too many and spent last night in hospital.

Unlike most people, I knew there was no point in telling him to take it easy or to have a few days off. Us campaigners and foot-soldiers just will not accept that the struggles will all still be here tomorrow. We push ourselves on, fuelled by injustice and adrenaline.

Anyhow, I sent him a song I've loved forever and hearing it again made we want to post it for all my sick and disabled friends who fight so hard. So, for all the spoonies out there, I give you, Vienna.

I'm sure many of you will have read "Spoon Theory" (link at the top right hand corner of my blog)

Well, to keep up the theme of cutlery, I thought I'd offer you Fork Theory.

Trying to explain what "Pain" means is useless. Everyone feels pain differently and we're programmed to forget any pain we have experienced. If you really want to go the whole 9 yards and understand what living with pain is like, give Fork Theory a go. Nurses might find it especially useful.

Sit in a quiet room, preferably alone and get comfortable. Take a fork, and press the tines it into the skin of your thigh. Use enough pressure for it to hurt, but obviously not enough to cause any actual damage. (Please remember that bit or I'll be sued from Surrey to Skye ;) )

This experiment works even better if you do it in the middle of the night. Whatever happens over the next hour, you must not stop pushing that fork into your leg. You can't relieve the pressure you apply and you can't get up to do anything. You can't get a drink or call out for anyone to help you, because they won't hear you.

Time the hour exactly. As it passes, notice if the pain seems to get better or worse. Does time speed up or slow down? Are you counting the seconds as they pass? Can you concentrate on reading a book? Could you do a full day at work?

This is the closest I can get to explaining how pain overrides anything else. Sadly if it had been real life, you wouldn't have known when it was going to end, or indeed if it would end at all.

Given the day I just explained, I think it "adds texture" (I think that's what they call it) if I mention a couple of other little snippets.

As I expected, no-one has asked how I am or come for a chat.

A friend of mine was just transferred up to this ward too. There's a spare bed in her bay and we asked if I could move in there. They said no.

Then, just a moment ago, I buzzed to say that my painkillers were due again. The nurse actually told me that I might have to wait a while, as they were in the middle of handover. I literally had to bite my tongue to stop myself turning the air blue before destroying her with withering scorn.

That's the toughest bit of all. If I complain or get rude, they decide I'm aggressive and take even longer. I literally have no choice but to dredge up a smile and tell her how grateful (eurggh, the word almost sticks in my throat) I'd be if she could manage to get it on time.

I'm in a danger zone now. If I'm not careful, I will start to feel every insult, resent every mistake, notice every failure. I will descend into a moaning, angry, demented woman on the edge, and that won't help anything.

The only thing that ever made my Dad cross when I was growing up was that childhood whine, "I can't do it."

He would make me keep trying over and over again until I cracked it and always told me I could be anything I dreamed of, achieve anything I set my mind to.

Over the years of being a patient, his advise has often been the only thing to get me through. However unpleasant a test, however searing a pain, however much I feel like giving up, I hear those words, "There's no such word as can't." I remind myself that however much something might hurt, however unbearably uncomfortable an investigation might be, if it isn't going to kill me then there's no reason to be frightened.

The most horrific incidents are now burnt into my memory. I've been diagnosed with Crohn's since I was 16, and in all those years, no-one has ever given me any emotional support at all. I've never been offered counselling, no-one has ever enquired how I deal with my illness and a doctor has never, ever asked me how I cope or offered any suggestions.

I know that some of the readers of my blog suffer from mental illnesses, and I know very well from my poor husband that depression is very real. With that in mind, I hope they understand what I mean if I say "I don;t do depression." I don't mean clinical depression, I mean reactive depression. The more I mope about, the worse I feel, so I've learnt to brush myself down and get on with life, locking the horrors away in a little box in my mind.

To my dismay, a while ago, the lid of the box kept pinging open. Seemingly randomly, an image of some dreadful living nightmare would pop into my mind unbidden, and I'd struggle to breathe. My hands would go clammy, my heart would race and I'd feel a scream welling up in my lungs, thumping against my chest to be let out. I could be cooking the dinner or waiting for a bus and suddenly, a sound or a smell would trigger a memory and I'd feel like I was there again, back in that particular moment of terror.

I find it incredibly hard to talk about my feelings, even with my husband, so telling the world wide web now is probably a little beyond me. However, to cut a long story short, I was diagnosed with Post Traumatic Stress Disorder (PTSD) and referred for treatment. unfortunately, that was just the day before I had to come back into hospital.

My very worst times in hospital have always been when, for whatever reason, I've been left in pain for hours on end. Unable to get out of bed, I've been left to suffer helplessly, with no way of knowing if anyone will ever come to help me.

These days, I am always written up for the right painkillers and I am able decide myself when they are given. As long as that system functions, I am pretty happy-go-lucky and all is well. It's the one thing I can control, the one crutch that enables me to bear the other indignities. As long as I can stay out of pain, I can focus my emotions on dealing with everything else.

I was moved earlier from one ward to another, and when I got there, I was due some painkillers. After a few minutes, the nurse came back and told me that they didn't have any on the ward and they would have to order it from pharmacy, which could take hours. Bam! The steel band slammed on my heart, squeezing out the air. I wanted to scream or run away or both. Like a slide-show, vividly real images flashed through my mind, an album of horror. I was helpless. My one defence against absolute dependence uncertain.

Many of you have said how well I cope, how strong I seem. The thing is though, I'm just human, exactly like you, I'm no stronger or braver, I just have no choice. I have to force myself to tolerate needles and tubes and blood and pain without making a fuss, but it seems my mind has other ideas and has drawn a few lines in the sand.

I've also mentioned, how over the years I've had to force myself to drink gallons and gallons of unpalatable liquid feeds. Apparently enough of that is also enough and my brain simply refuses to let me drink large quantities of unpleasant liquids any more. Like Gillian McKeith on a bushtucker trial, I just can't make myself do it. There is such a thing as "can't" and it feels horrible.

In the midst of my panic over the lack of painkillers, a porter arrived to take me for my MRI scan. Struggling to breathe and control the enormous lump of panic in my chest, I had no choice but to get into the wheelchair and be pushed through the hallways in floods of tears, hiding my face in my hands for dignity. Without my meds, I felt unbearably sick and by this time my painkillers were two hours overdue, so the pain was gnawing and stabbing unmasked.

In this shameful state, a radiographer appeared with a 2 litre jug of liquid and explained that I'd need to get through it all before they could get a useful image of my bowels. Slam! The belt tightens more. I see forced tubes and failed biopsies and agonised presses and the scream bubbles closer and closer to the surface. I sit like an imbecile, rocking, unable to explain why I was behaving so oddly. A slightly detached me could see that I looked neurotic and pathetic and difficult but "Can't" had caught up with me and I was totally unable to shut it back in the box.

The test I'd waited so long for was slipping away and I couldn't do a thing to stop it. Defeated, they pushed me back up to the ward, still sobbing and choking on panic. I'd never refused a test before - never even complained about one.

The oddest thing about all of this, is that rather than becoming more supportive or sympathetic, the nurses largely left me to cry and panic alone. They were irritated by my weakness and suspicious of it's motives. I've had the injection now (2 and a half hours overdue) and I've just had some supper, but no-one has spoken to me, no-one has checked if I'm more comfortable or happier and no-one will now. Tomorrow I will smile and joke with them and we'll all pretend it never happened. If I'm lucky, they'll give me the benefit of the doubt - another chance before they classify me as "neurotic" and I lose my trust privileges. **

I can't tell you how I detest sharing this with you all and I am wriggling with embarrassment at the thought of posting it, but it's the kind of event that I've always wanted to share with the world, so I'll just have to swallow my pride. (There's room now the enormous ball of panic has finally gone down.).

The moral of my story, is that even the best nurse or doctor can forget what it is they ask their patients to suffer, how much courage they expect them to find. They have a job to do and it's the easiest thing in the world to forget how traumatic all of the needles and tubes and side effects can be. Even so, if a patient says they can't bear to go through a particular procedure, it is always worth asking if you could do it yourself. Not only could you do it, but could you make yourself do it over and over and over and over again?

**Trust privileges include going for cigarettes un-escorted, freedom to go down to the shops to buy snacks, friendly care and extra cups of tea.

I woke feeling sick an hour or so ago. The ward's very busy tonight and they are short staffed. I asked for an injection and waited. And waited. And waited.

I buzzed again and the nurse said no-one had told her.

I waited some more. Nothing.

I buzzed again.

The nurse said she'd go see.

I waited some more. Nothing.

I buzzed again.

A third nurse said she'd go see.

No-one ever came back. No explanation - "We're so busy my love, we just have 2 IVs to do and then you're next."

Time seems slower at night. You feel lonely, more frightened without the reassuring sun.

At last, I give up. After an hour, I drag myself out of bed and shuffle painfully to find my nurse. I'm upset by now and cross. When I find her, she is doing something else. Tears are rolling down my cheeks and I ask her why no-one could come back and at least reassure me that I hadn't been forgotten.

No-answer. It's her job you see and none of us like to get told off at work.

I shuffle back to my bed, despairing.

Thanks for holding my hand and don't forget, this little chat never happened.

Monday, 22 November 2010

Back in 1985, his family suffered dreadfully at the hands of the NHS. He finds the frustration, incompetence and horror of some of my posts all too familiar and hates to be reminded.

With that in mind, and because I'm painfully aware that my blog should never become one long, aimless, complaint, here are the improvements I value most over the time I've been a patient.

1) The big change is in focus.The patient is now at the heart of most systems, procedures and innovations. Where it used to be the doctor that had all the power, that power has gradually been handed over to the patient and though there is still some way to go, it's made a world of difference.

2) Pain. Over the years, research has shown that if pain is controlled, everything else is improved. The patient is less stressed, the pain never gets so out of control that you need more analgesia just to get on top of it again. Pain is more often than not a top priority now and it has changed my hospital experience totally.

3) Food. By the late nineties, hospital food had become so unpalatable and of such poor quality that it was almost never eaten at all. Patients suffered malnutrition and it even hindered their recovery. These days the food is really quite good, there are nice desserts and there are even biscuits on the tea trolley. This might seem a small thing, but it's not. Patient's used to regularly miss meals because of tests or doctor visits and now, they are encouraged to ask for food whenever they are hungry and encouraged to eat as much as they can. Personally, I feel this might be the most important improvement of all.

4) Respect. The patient is now consulted on everything. All procedures are explained, permissions are sought and staff are courteous. We aren't always quite where we should be, but I think Howard would be delighted with the improvement.

5) Waits. Whenever I heard someone complaining about waiting lists, it was always a doctor or a politician. From a patient's point of view, they were marvellous. Gone were the days of 2 year waits for surgery, months on a waiting list to see a Consultant or endless investigation lists. A & E was transformed and doctors lost the ability to play favourites with the procedures they preferred, leaving the mundane stuff until they literally couldn't put it off any more.

6) Ditto targets. Finally, doctors had a reason to get on with stuff and a consequence if they didn't.

7) Finally, and of course most importantly, technology. In every field, enormous steps have been taken in research, treatment, investigations and understanding. As a result, we, the patients suffer less, live longer, have a better quality of life and suffer fewer symptoms.

It's an infuriatingly slow process. Often you feel you have taken one step forward only to be pushed two steps back, but gradually, over the years, things evolve, and on the whole, they've evolved for the better.

Under the bed?
In a long forgotten tin on the sideboard?
In a winter coat pocket not checked since last year?

Do politicians really have to make their contempt for us so clear?

We have just spent 5 months being told daily that there is no money left, Labour spent all the money, we're on the brink of bankruptcy, we're all in this together. In the name of patriotic duty, we are told that disabled people must lose their dignity, hospices for dying cancer patients must be closed, Legal Aid must be slashed and schools should not be built, yet we apparently have a few billion lying around here and there to loan to another country to alleviate it's debt.

The reality is, that we will borrow the £7 Billion and add it into the vast trillion or so we owe already, effectively paying interest on Ireland's debt for her. We are borrowing the money on her behalf, as she can't get credit.

So, just to be clear, the banks took stupid risks with our money and went bust. We gave them over £800 Billion to stay solvent, and they will be taxed just 2.5 Billion back through the bonus tax. They are awarding themselves Billions in bonuses for spectacular failure and they still expect us to find Billions any time another financial crisis looms, Meanwhile, our wages and benefits are frozen, VAT will go up, our poor are to be evicted, our university funding will be decimated and nurses, doctors, paramedics, fire-fighters and police officers will lose their jobs.

Are we honestly going to put up with this for much longer?

Are we really going to keep on believing that "There Is No Alternative" and allow the caveat **unless you're a bank, PLC or politician?

If anyone is going to bother telling me that actually we had no choice, Ireland going bust would have damaged us much more, it's in our interests to help such a close neighbour blah, blah, blah, blah. Just don't bother. I heard it all when the banks failed initially and I reject totally the suggestion that foolish, greedy businessmen are more worth saving than the people who look after their children, empty their bins and care for their elderly parents in 5* Care homes.

I've very consciously avoided making a detailed judgement on how I find the NHS this time round. With my very obvious left leaning views, it would be too easy to jump to criticise things, just because we've had a change of government.

I had planned tonight, to write a post highlighting all the wonderful improvements that have been made over the last decade or so. There have been some great strides taken that have benefited the patient enormously, and I will come back to "Howard's Post" tomorrow or very soon.

In the meantime, there was a little incident today that I wanted to share with you. It's a tiny cameo of the type of incident that happens to most patients at one time or another, and one that can be the most distressing part of any stay. They don't come down to funding or efficiency, they come down to people.

The NHS is vast. I believe, for instance, thatAddenbrookes alone employs around 6,000 people and that at any one time there are around 1,000 patients. It is absolutely inevitable that amongst those 6,000 there will be saints and sinners, angels and demons, heroes and villains. Sometimes, we just take a dislike to someone for no particular reason - we do it in life, why wouldn't we here? Other times you might catch a nurse or doctor at the wrong time, at the end of a week of nights or a dreadful shift or with personal worries clouding their day.

Years ago, the patient/nurse or patient/doctor relationship was much less balanced than it is today. Patients were rarely consulted, often ignored and too frequently mistreated. Over the years, starting with John Major's "Patient's Charter" and developed extensively by Labour, the patient became the consumer and her rights became the focus of care rather than an afterthought.

Still, with all that said, there are a very few nurses or doctors who are simply awful at their job. It is a shocking thing to say, totally taboo unless the Daily Mail finds itself sexed-up by a Harold Shipman. Very occasionally, a nurse is simply cruel - there, I've said it. Just as priests may occasionally be more interested in choir-boys than God, so a nurse or doctor may be more interested in wielding absolute power over the vulnerable than they are in providing care.

I could tell you some stories, from over the years, that would make your hair curl. (I won't here, but I'm sure I'll drop a few posts into the mix here and there over the months ahead.)

Last night, it was about 7.30pm when I came up to my new ward. I was dropped off at the bed and then saw no-one at all. I didn't know where the toilets were, and if I'd been a bed-ridden, hospital virgin, would have had no idea how to call for help or get a drink. No problem though, little things like that stopped stressing me years ago. After a couple of hours, I wanted to go for a cigarette, so I asked a nurse if I could. She asked if I would mind asking the Healthcare Assistant to do a set of obs first, just to make sure I was safe. A few minutes later, the healthcare assistant wandered into our bay and I started to ask her what time she normally did obs. (That's the double-PHD in patient-hood kicking in there, never ask someone to do something, just ask a polite question that makes them offer and think it was all their idea in the first place.)

Amyway, I didn't even finish the sentence before she snapped "I'm busy at the moment." A second or two later she added an "As you can see." A staff nurse caught my eye and raised her eyebrows at me, but I just shrugged and smiled. A while later, it was time for me to ask for my painkilling injection, so rather than interrupt her (as I'd gathered she didn't like interruptions, lol) I pressed my call button. She looked up and said "Do you want something?" I explained that the injection was due but she answered - in a stupendously patronising tone - "The nurse will know when to bring your medications Susan." I paused for a moment to control my temper, and then replied calmly that the injections were PRN - meaning I have to ask when I want them, they aren't given routinely. She didn't answer.

We had a very disturbed night, nobody got any sleep. There is a severely disabled patient in the bed opposite mine and she was frightened and confused, away from her usual routines. She finally went quiet at about 5.00am but just before, I heard the old lady in the bed next to mine beg the HA for a little peace and heard her answer "She can't help it you know!" No sympathy or care, just a ticking off.

I'd only been asleep for an hour or two, when I woke with a start to find the healthcare assistant standing by my bed with blood pressure machine and thermometer. She was very young, with one of those glowing, scrubbed-clean complexions that you only have when you're in your late teens. For a few moments, I couldn't remember where I was and when my eyes focussed and I remembered I was in hospital, I noticed that she was just standing by my bed staring at me. Suddenly she asked "Have you got a problem?"
It wasn't even a "Have you got a problem (I can help you with?)" it was a "Have you got a problem? (Oi, you outside... NOW!)"

My blurry brain, instead of focussing on the matter in hand, chose to wonder when anyone had last spoken to me like that? Primary School? Secondary School? I hedged a bit, and asked her what she meant.

"You're glaring at me so you obviously have some kind of problem, what is it?"

My brain cleared a bit more and assured me that, yes, she really was picking a fight with me!! Astonishing!

I managed, even then, to keep my temper. I didn't shout at her, I wasn't rude or insulting, I explained that I hadn't been sure where I was when I woke up, and that if she had been woken up, at 7.00am, by a stranger standing by her bed, she would surely need a moment to gather herself? Even more astonishingly, she answered "Or you might be the problem? Maybe you're just rude?"

Now I'm easy going, but even my children know not to bother me with anything until I've drunk my first cup of tea. I am not a morning person and my tolerance levels rise sharply after about 9ish.

I gave up on mollification, and answered her question.

I told her very quietly and politely, that in the 16 years I had been an in-patient at Addenbrookes, I had never come across a member of staff with such little regard for her patients. I told her I had not heard her say a single kind word to any of them, nor had I seen her smile. I said she had been efficient, but patronising - and in my case, aggressive - and had not shown any sympathy or kindness at all. Finally, I explained that in the many, many months I'd spent as an in-patient over the years, I had never been moved to speak to a member of staff as I was now speaking to her.

I wasn't really cross, but I know I would have been beside myself a few years ago. I didn't complain or even mention it to anyone else, but I did notice that she was a much better nurse for the last hour of her shift.

You probably remember from my last few posts, that the hospital doctors thought it might be nicer for me to spend a few days back at home with my family while I waited for the MRI scan.

My saintly husband drove all the way to Addenbrookes after he finished work and drove me the 130 miles home. By the time I got back I felt terribly nauseous, despite the medications and by midnight I started to vomit. I was sick every twenty minutes or so all through that first night and all through the next day. By that evening I was practically delirious, and I couldn't get out of bed, let alone down the stairs.

I spent all of the next day in bed, unable to get down the stairs, too weak to even have a wash.

My husband phoned the hospital, frightened that my bowel might be totally obstructed and dangerous, so they told him to bring me back. The problem was, my bed had of course been filled and there is no bed manager over the weekend. All I could do was go to A&E and they would admit me from there.

So, here I am, back in a hospital bed, feeling a million times better than I have for the past few days.

You always know you're really sick when you're actually glad to be an in-patient!!

Wednesday, 17 November 2010

You wait for tests to be scheduled, you wait for late appointments, you wait for a nurse or doctor to come with your meds, you wait to see if a treatment works, you wait for surgical dates, you wait for someone to bring you a drink, you wait for drugs to work and you wait and you wait.

I'm a fairly impatient person at the best of times and I've often wondered if my lesson here on earth is to learn patients.

It's not unusual for me to sit for two or even three hours, staring into space, waiting for an overbooked consultant or for a porter to take me back to the ward. I don't really get bored any more, I learnt years ago to fall into a kind of daydream. The more you fret and stress, the longer the wait seems.

At around midday, the doctor came to see me at my bed and suggested that as I had to wait so long for an MRI, they would be willing to send me home for a few days. As long as I had the right painkillers and anti-sickness medication, I would be much more comfortable waiting in my own bed at home, than I would waiting here.

I would need to be discharged and that would mean getting enough of all my meds up from pharmacy to last me over the weekend. In true NHS style, no-one even thought to send the chart down until 3pm!!! When they did send it they forgot the accompanying letter, so that took pharmacy another hour or two to sort out. Then, when the prescription came up, they'd given me tablets instead of injections, so that took another hour or so to change, then they realised they hadn't included any needles or syringes - I had a bag full of injections and no way to administer them.

Now, its 7.45 and I've just got everything sorted out. 7.45pm!!

A patient feels almost permanent frustration, but agonisingly, we can't get cross or rude, however much we might want to take them by the arms and shake some sense into them. I'm not telling this story because it's remarkable in any way - it isn't, it happens to all patients, every day. I'm telling it in the hope that someone, somewhere thinks "Hey, yes, that's a silly system, let's change it"

There are sooo many ways the NHS could be improved and I hope I can highlight some of them here.

All too often it seems as though those in charge of hospitals have had a total logic bypass.

I need to have an MRI scan before they can operate, to give the surgeon at least some idea of where the blockages are and how complex the op might be. Unfortunately, in the words of my doctor the MRI department are "being obstructive." Despite me being an in-patient, they don't consider me to be ill enough to schedule the test as urgent!!! By the time they do actually run the test, I'll have been in hospital for nearly 2 weeks! 12 days to be precise.

The only reason I'm in hospital at all, is because no GP in the world will prescribe strong opiates and anti-emetics in the doses required for someone like me. At home, if I'm lucky, the GP will allow me 1 or 2 doses a day but no more. The injection works for around four hours, so even with two a day, that leaves 16 hours when I'm in pain! 16 hours!! All I need at the moment is to be kept comfortable until it's all over.

So, for 12 days I will have sat in a hospital bed, wasting the space for someone who might need it all, just because the doctors can't get a test done! Every day I spend in hospital cost the taxpayer a fortune too - I've heard claims that it costs over £1000 per day to keep someone in hospital, which, if true means an unnecessary cost to the NHS of £12,000 before they've even started to treat me.

Meanwhile the MRI scanners sit empty during the night and at weekends. why on earth wouldn't the hospital implement a 24 hour shift plan allowing the scanners to run all day and all night? Out-patients could be dealt with during the day, leaving the evenings and weekends free for in-patients. Just think of the money they could save not to mention easing the frustration of patients stuck in hospital unnecessarily.

What on earth about that is too complicated for them to realise all by themselves?

I think the thing that really helped to convey it best was when hospitals started to allow patients to administer their own drugs. My bowel is usually so inefficient, that any medications I take orally might not have any effect, or they might work several hours after I've taken them, leaving me at risk of overdosing.

Over the years, I've learnt to give myself injections, either just under the skin (sub cut) or into a muscle (IM). When I have Crohn's pain, nothing matters but getting rid of it. I barely notice the bee-sting of the needle or the cramp as the liquid analgesia seeps deep into my muscle - the pain I'm already in means that I barely even notice.

When I started giving myself injections on the ward, without fail, the nurse who had bought it would tell me how brave I was. Despite 12 inch abscesses, perforated bowel, adhesions, obstructions and twisted guts, it was pushing a needle into my own flesh that they could empathise with. They could see it and imagine how it might feel.

Now, when they say I'm brave for giving myself injections, I just ask them to imagine how bad the pain in my gut must be if I'm willing to inject myself to get rid of it.

Monday, 15 November 2010

We've all seen one of those B movies where another species live unseen alongside humans. Sometimes they are aliens, sometimes they are angels, but the formula is always the same.

The grey, concrete buildings of Addenbrookes are crammed daily with enough staff and patients to populate a small town. The campus is vast and has it's own shopping centre, burger bar and coffee houses. On a rare good day, a patient could spend the day shopping, having lunch and pretending they're not really in hospital at all.

If you were to walk through the doors into the vast concourse and stop to watch for a moment, you might think you've stumbled into the Ealing Studios.

The rainbow of staff, in their various uniforms or well tailored suits stride out with confidence across the marble floor. Their hair shines, their eyes glow, they are charged with determination. They stand tall with the restless air of those who have somewhere important to be. They don't see what you, the viewer can see, standing by the door.

You can see the others.

The others have loose flowing robes and strange machines. Their eyes look haunted and dull, their slow movements seem a lethargic parody of the bustle of the staff. They stoop and they shuffle, their hopes and dreams suspended indefinitely.

The two exist side by side but neither seem aware of the other at all.

Sunday, 14 November 2010

I have the most excruciating pain. It's in my chest and there's nothing they can do.
There are no drugs powerful enough to even take the edge off and no matter what position I sit in, whatever distractions I devise, it overshadows everything.

3 Hours ago, I stood outside the lift back to my ward and said goodbye to my husband and my babies. The 6 year old was devastated, crying and clinging to me and begging me to come home with them. Like the grown up I supposedly am, I had to gently prise his little arms off my leg and smile and tell him everything would be fine and I'd be home before he knew it.

By the time I stepped into the lift, I crumpled, but sod's law made the doors open up again and there was his little face, looking hopeful that I'd changed my mind. I dredged up one last beaming smile and then played hide and seek as the door slowly shut us away from one another.

It's tucked away, behind the hospital, only reached by a maze of corridors. It's a long walk. By the time I get to the door and open it onto the real world I'm tired, but the second I feel the cold night air on my skin, carrying away the hospital-stench of sickness and decay, I relax.

It's quiet. The whirrs and beeps and shouts and buzzers all left far behind. There are benches around a beautiful statue and the borders are planted with rosemary, sage, roses, violets and bay. The trees give shade and remind me that they will still be here long after I've gone. As the buds start to form in spring I will be well again and Addenbrookes will be long forgotten.

No-one seems to remember it's there. It gives me the one thing no hospital can. Peace.

I always sit alone, relieved and grateful for the solitude, for the rare moments of escape and it's crossed my mind that maybe it doesn't really exist at all. Maybe, it's all in my mind.

Saturday, 13 November 2010

It came from the blog of Christine Miserandino and it is the best explanation I've ever read of the sort of lives us sickies live.

I also think she writes beautifully and there are lots of bits and pieces at this site worth a read.

If you are one of my sick or disabled readers, you might even have come across it already - I don't know how I could possibly have missed it until now. There are now thousands of "spoonies" and I've already used the phrase "running out of spoons" about 4 times today.

Hopefully, it might help some of us to finally be able to put into words how different our lives are.

Friday, 12 November 2010

Here we are in my little bay on ward C6, four ordinary women, various ages, various professions, various symptoms.

Just a few days ago we were free. We chose when to eat, when to sleep, what to wear. We never stopped to think about our freedom, it was just a part of the chilly autumn mornings like the frost and falling leaves.

Now we are here. Incarcerated , observed and restricted. We can't leave. We can't get a nice chilled glass of Chardonnay as we normally might. We can't boil a kettle in case we scald ourselves. We can't sleep in in the mornings and we can't stay up late at night. (Lights go off at 11pm.) We can't keep our own meds in our own bags and we can't make a cup of tea when we fancy one. We can't see our friends or our family at a whim - we have to arrange "visits."

We can't smoke, though of course we all do. Like a scene from The Night of the Living Dead, we huddle together in a drafty bus stop, our various bleeping machines supporting life through tubes and pumps. We are a motley crew, us lawyers and teachers and bin men and alcoholics, anonymous yet resplendent in embarrassing pyjamas and novelty slippers. We are levelled by our shared horrors, united by fear.

Our hairstyles, moustaches and beards reach levels of neglect, that, frankly, would not be acceptable in the outside world, but we are beyond noticing, pre-occupied as we are, with survival . We get surprisingly attached to one another, become intimate through our shared dependency.

If you've always been relatively healthy, I think the thing that might surprise you most about becoming sick, is on just how many levels you have to fight.

You can. perhaps, imagine the physical fight. It's demanding, daily challenging, exhausting and unremitting. You live in a kind of endless Groundhog Day which just repeats and repeats as weeks turn into months and months turn into years.

From reading my blog and others, you might be starting to get an idea of the bureaucratic fight. The endless forms, the badly designed benefits, the assessments and statements and tribunals.

But, without any shadow of a doubt, the hardest fight of all is often with the very people employed to help you. The only times I've ever wanted to give up, have been when a doctor or nurse is either incapable of doing their job, unwilling to or - the worst of all - too cruel to.

A doctor or a nurse holds a unique position of power. They and they alone hold the key to unlocking our lives. They must write the referrals, they must make the phone calls, they must write the prescriptions and they decide what is wrong with us. Sometimes you are bedridden and totally dependant on a nurse and she has the power to decide when you eat, when you sleep, when you suffer in pain - even when you relieve yourself.

The first great Sickness Battle often comes when you are trying to get a diagnosis. There is an odd sense of being "guilty until proven innocent" but you're not sure what you are guilty of. It took me 6 years to be diagnosed with Crohn's disease - 6 years of being told I was "just entering puberty" "just depressed," or "just anorexic". the GPs only saw a young girl who was very thin and being sick a lot and decided they knew best. My poor mother fought and fought for 6 long years, before anyone even bothered to do a single test. It was frustrating, astounding even, to sit in a consultation, describe your symptoms and be told "It's probably all in her head" or "does she have any problems at school?" or the worst, "Are there any problems at home?"
Over and over and over doctors fobbed us off, sent us away and left us helpless. I loved school, had lots of friends and a lovely family life, but in the end, you even begin to doubt yourself. Am I making myself ill? Is it my fault?

The truly frightening thing is, this is not unusual. Read through the comments on this very blog, ask a friend with a long term health condition - this is the norm. GPs seem to exist as a barrier to care, a shield to guard precious NHS resources. First you are sent away. Then you are sent away with a prescription, then you are sent away with a different prescription, then, finally, if you are persistent enough you might be referred to a consultant.

I've spoken a little about pain. The truth is, though many hundreds of thousands of people endure terrible pain on a daily basis, very few are allowed any analgesia. Doctors have the power to choose to alleviate your suffering or not. More often than not, they won't prescribe strong painkillers and perversely, the more you beg, the more of a junkie you sound. I remember having to call a doctor out one night in screaming agony and when she got to the house and we explained that I had Crohn's, she gave me a good telling off, telling me she "Didn't prescribe pethidine for tummy bugs." I was clearly obstructing, but she didn't so much as examine me, although just a few weeks later, my bowel perforated.

The more you get to know your condition, the more of an expert you become. It often isn't long before you are the specialist in your own condition, with a wide knowledge of treatments, the pathology of the disease, it's symptoms and it's side effects. Soon, you know as much, if not more than your Consultant, never mind your GP. At this point you discover most doctors don't like this at all. They hate being told their job. You learn a thousand different ways to tell them things without seeming like a know all, to pander to their ego whilst making sure they do what you need them to. You never get cross, you never raise your voice, and you never, ever, cry. If you want to query a prescription, you imply that you are the forgetful one and can't quite remember the dose, so that they have to look it up in the BMJ and realise their own mistake. If they don't know what something is, you casually query an "article" you read describing something "a bit like it" allowing them to save face by mentioning the name of the complication as though you aren't sure how to pronounce it.

You fight to get the right medications, you fight to get treatments you desperately need, you fight to be seen before you become critically ill, you fight not to be given drugs you are allergic to, you fight to be admitted and time and time and time again, you fight for your life. It's not your job or your hobby, it's your life. When they say "Well, let's see how you are in a month or two," it's just their job, but a month or two for you might be too late.

I used to describe it like this : There are Vocational doctors and Conveyor-Belt doctors. Vocational doctors are wonderful. They want to make you better, they empathise with your symptoms, they hold your hand and sit on your bed and they care. Conveyor-Belt doctors are doctors because Mummy and Daddy would accept nothing less. They surf in on a wave of expensive education and arrogance, spraying us tiny people in their wake. They talk to a spot above your head, they never listen and they're too busy thinking about the Chief Exec's office to give any thought to what might actually be wrong with their patients.

When I first became a patient in the mid to late 80s, doctors still enjoyed an almost God-like status. They were autonomous, largely unaccountable and never questioned. A doctor who made a mistake was rarely struck off, just quietly moved to another hospital. An incompetent or ignorant doctor had the freedom to act as he wished, safe in the knowledge that the BMA would rarely step in.

Over the years, things have improved. Doctors are more willing to share best practise with one another and take on new ideas. They are more accountable and on the whole, have better patient skills. But, every now and then, even after 27 years with a double-doctorate in doctor handling, I run into a dinosaur. 5 months of my life were totally ruined as recently as last year by a doctor who simply refused to deviate from What He's Always Done. He refused to return any calls, mismanaged my care, left me in excruciating pain with a raging-out-of-control infection, and all of this eventually lead to me having a massive seizure. When I complained, the vast NHS net of silence descended, notes were lost, letters amended and that was that. Even with all my knowledge of the NHS, my infinite patience and masterful tact, I still hit brick walls and there is simply no way at all to penetrate them. Once a doctor has said "no" you have nowhere else to go. If a doctor chooses to take his time, you just have to wait, if he chooses not to believe you, then that's that.

Any government that really wanted to save the NHS money, would take on the BMA head on. They consistently block progress and innovation and still run what is as good as a "closed shop" when it comes to accountability. The entire doctor patient relationship needs an overhaul, but it's rare indeed to find a politician who is up for the fight.

**I wrote this little poem one day in bed, waiting for a house call from some unknown, on-call doctor. I wrote the first part as I fretted about whether or not they'd be kind or cruel, whether they would deign to relieve my suffering or just conclude that I was a junkie. The first part was written just after I called him out, the second part three hours after my original call, as I still hadn't heard. I was just 17 years old and already so cynical.......

Thursday, 11 November 2010

**While I'm in hospital, I'll probably post much more. I've always wanted to be able to convey the frustrations, brilliance and terror of a long term hospital stay, and this finally gives me a chance.

For the next few weeks, I'll try to give a full picture of what goes on. In particular, I want to point out areas where things have improved and areas where I think simple changes to the NHS could save millions or make the system work better for the patients.

Treat my site as more of a soap opera for the next week or two. If I write about anything else, it will have a title, otherwise posts will just appear under Day1, Day 2 etc. (You might just want to check up at the end of the day, so that you get each instalment in a more coherent chunk.)

So, not the best of starts, but definitely not the worst.

It took two hours for the doctor to come and see me and do her admission notes. She was very good though - spoke to me like an equal and asked good, thorough questions. She'd even read through my notes a bit beforehand. (Might sound obvious, but you'd be amazed at how many don't!)

There was the usual confusion over my meds - none on the ward, pharmacy wouldn't be able to send any up until evening. (and that was apparently "fast tracked"!) Then a mad flurry when I explained evening was too long, then the injection came, but without the anti-sickness part - all the usual stuff.

In a day or two we will be much more used to each other and this will all settle down. I will slow down and get used to the institutionalised nature of everything.

I finally got a call last night at about 7pm, saying they had a bed for me. There was no way I could leave there and then, so we've just trudged up the M11 this morning.

On the way up, I'm on edge.

Will the bed still be available? Will I be on a proper bowel ward or squeezed in with the geriatrics or gynae patients? Will the staff be nice?

The biggest fear of all is handing over control. Anyone with a chronic condition will have spent years working out the best regime for them. As soon as you go into hospital, you have to hand over all your medicines and routines to other people and it's horrible. On a good ward now, they will let you "self administer" your drugs, giving an element of control back, but that doesn't include controlled drugs like opiates. Those you have to ask a nurse for and then wait until she has time to find a colleague, draw up the injections and get back to me. Once I'm at this stage, all I really need is regular painkillers and anti-sickness injections. Literally the entire success or failure of my stay will depend upon the attitude towards pain and how busy the staff are.

If you could see me now, you'd laugh. I have my own tea cup, my own teabags, my own blanket and pillow, my laptop, a picture of my boys up on the side - it's a bit like a Travelodge in my bay. As long as they bring me regular tea, feed me and keep me comfy, I'll be no trouble at all......

the OECD concluded that our work capability assessments were the toughest in the world before ESA was even introduced.

I don't bother claiming for most things as it's just too, too stressful. I only claim Incapacity Benefit and though I'm entitled to DLA and possibly other help, I stopped claiming it, as I just felt too much under suspicion and the actual process of applying was just too traumatic.

The irony is, that when you most need the help, you are least capable of getting it. You just don't have the strength to fight the inevitable frustrations of getting the forms, (40 pages+) filling them in, reminding yourself with every answer just how sick you are, waiting for a decision, forms getting lost somewhere in the bureaucratic swamp, starting all over again, endless waits on the phone being given number after number until I get hold of the right person.....

Imagine you have appendicitis for a moment. The pain is excrutiating, it muddles your brain with cotton wool, you certainly wouldn't be capable of doing the equivalent of a full day's work and being endlessly patient with people at the other end of the phone. You worry about being "under suspicion" all the time - "What if someone's following me? Taking pictures? What if they catch me on a rare good day and accuse me of fraud?" Too, too scary.

Most of us don't dare to stop our benefits if we do feel OK for a while, because the system is so complicated and time consuming. You live in terror that once you step out of he system, you might never be allowed to step back in.

As I wait for the call to tell me there's a bed in hospital for me, I am terrified about how we will get by. Last time, it cost us £9,000 in lost work days for Dave, petrol to and from hospital, B&Bs for Dave and the boys to stay in when they come up at weekends to visit, prescription charges, parking fees etc etc.

I should be only really be concentrating on getting well, but the system just does not allow me to.

I'm shaky and tingly and I have no energy. When I say no energy, I think that's the hardest to convey. I literally can't get out of the chair, can't do a thing.

I think the problem is probably absorption. I've been on steroids since I was 16. In those days, they didn't really do anything else and I was left on them for so many years, I became dependant on them. In the end, your adrenal gland just stops functioning and you develop something called Graves disease. (They've also given me osteoporosis, but that's another story....)

When my bowel gets really messed up, I don't absorb meds I take orally. I take most things by injection, but I can't have the steroids that way. Normally I just slam the dose right up to ensure something gets through, but I haven't got around to doing that this time.

The result is no adrenaline at all.

I really, really really want to be in hospital today :(

If I feel better later, I'll try to be witty and erudite, but this morning it eludes me.

Tuesday, 9 November 2010

What is it now 5 months of a Tory government? (I won't even bother with the "coalition" bit - that's not what we've got)

Over the years, I've got to know my bowel "team" very well indeed and they know me too.

We have an unwritten code : I stay out of hospital until I'm on my knees, they admit me when I say it's time. ("time" meaning, "OK, this is probably getting a bit dangerous now")

I tell them where the strictures/blockages are, they do a cursory test or two to confirm, then the surgeon does his stuff and we save the NHS a few grand in wasted tests and bed space - every one a winner.

Well, for the first time in over a decade, a very harassed consultant nurse phoned me a few minutes ago - that's right, well past 7.30pm - to tell me there's no bed as yet!! The hospital is on "Black alert." Cuts have meant cancelling agency staff. I joked that it was a bit too soon to blame the government, but in her words, "We're in a terrible mess here already. For a good hospital like ours - a flagship hospital - it's terrifying."

So thank you all those who voted Conservative (and by proxy, the poor misled voters who voted LibDem) There was never any doubt in my mind whatsoever that this would happen, I just didn't think it would be this quick. Anyone who thinks I'm simply seeing things through those comfy old rose-tinted specs is more than welcome to meet me back here in 5 years time, (probably an op or two down the line for me) when it won't just be regulars like me who are affected, but all of you.....unless of course you've got a few grand spare to pay.

Wikio

Gadget

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About Me

I have a rare form of Crohn's Disease. I was diagnosed 21 years ago and have had many operations to remove strictures (narrowings in my bowel that grow like tumours) I suffer daily pain, often vomiting, malnourished and weak. I take mega-strong medications every day including chemo-style immuno-suppressants, opiates and anti-sickness injections. Sometimes I am fed into my central vein by tube, other times I can enjoy a nice meal out. I have children that I often can't look after and a husband who often looks after me.
Our lives are disrupted daily by the misery of a chronic condition.